InTouch - Spring 2017 by United Response

InTouch

SPRING 2017

The magazine for families and supporters of United Response

Love is in the air!

How United Response is helping more disabled people into work

How brilliant staff support helped one coupleâ&#x20AC;&#x2122;s relationship blossom

ALSO INSIDE

The importance of campaigning

How technology is opening up the world for disabled people

Early bird entry just £10!

Sponsorship targets: £450 for individuals £425pp for teams of 2-3 £400pp for teams of 4+

Join our team Cycle on 100 traffic-free miles through London and Surrey. Money raised through RideLondon helps provide little extras that truly enhance the quality of life of your loved one and everyone else we support.

Our riders get:

✔ Free cycling jersey ✔ 2 cheering stations ✔Cheering pack ✔ Tips and advice

Charity no: 265249 www.unitedresponse.org.uk/ridelondon or events@unitedresponse.org.uk

CONTENTS

Editorial

NEWS

Find out what’s going on around United Response.

YOUNG PEOPLE

All about the students with learning disabilities living it up in Cheshire.

EMPLOYMENT

United Response supports people into work in a variety of ways - here’s a round-up of some of them!

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YOUR STORIES

We meet the mother who campaigns for her disabled son.

COMPLEX NEEDS

A look at how technology is changing the way many disabled people communicate.

AUTISM

Someone we support shares his unique perspective on what being autistic means for him.

MENTAL HEALTH

How getting the right support has helped one mother continue to lead an independent life with her son.

ince the last issue (Summer 2016) a number of things have changed worldwide, but here in the sector of disability and social care we continue to face the all too familiar challenges that a climate of austerity brings. We continue to hold true to our values and work to ensure that all the people we support have as all the opportunities they want and need to live their lives. Along with In Touch magazine you will also find your copy of our Annual Review and Impact Report, outlining the achievements and progress of 2016. The report sets out our strategic objectives for the next four years, whilst holding to our values as the “golden thread” in everything we plan to do. Following the disappointment of the Autumn Statement 2016 when the Chancellor failed to address the social care funding issue we have continue to lobby key individuals and departments both within central Government and at a local authority level. The crisis within the social care sector has been universally acknowledged and ahead of the Spring Budget 2017 we pushing hard for the vital increase in funding needed to meet the true cost of providing good social care. On page 12 you can read about how a parent campaigned for son.

We actively encourage everyone to get involved, we have re-launched our Postcards from the Edges campaign so that everyone involved in social care has a platform to explain what good care means to them(Page 13). In February we have submitted our response to two separate Government consultations. The first submission is the first phase consultation about the Government proposed changes to housing benefit and this will affect people we support and their housing from April 2019. Ben Harrison, our Housing Expert outlined the main thrust of the proposals in his column on page 19, where you will also find a link to our full submission. The second submission is to the Work, Health & Disability Green Paper which ask what will it take to transform the employment prospects of disabled people in order to fulfil the Governments manifesto pledge to half the disability employment gap. Our response has 12 key recommendations that where developed after consultation in our specialist employment teams in York, Trafford and Cornwall. We will continue to investigate and challenge Government policy that effect the day to day lives of the people we support, their families, our staff and partners.

FEATURE

As Valentine’s Day comes and goes, one couple share their journey towards their happy ever after.

GETTING THINGS RIGHT

We ask our experts how United Response manages the quality of its services.

Tim Cooper Chief Executive

UNITED RESPONSE NEWS - THE FUN STUFF

£450 was raised on the night, helping to buy a hot tub for the sensory garden at the house. The garden recently came third place in the North Tyneside Council ‘In Bloom’ competition, for the second year running. Service manager Carolyn Palmer said: “Both men love water and used to visit a hydro pool regularly, so having their own hot tub has made a huge difference to their lives. I want to thank the team and the families for all the effort they put into the event. It was a massive success.”

Pearson Place, a service in North Tyneside where two men with autism are supported, recently celebrated its 10th anniversary with a fun-filled party at the Whitley Bay Rugby Club. A tasty buffet dinner, live disco and tombola were all part of the birthday extravaganza, with some fantastic prizes up for grabs, including a football signed by all the Newcastle United players, which was won by Lee’s nephew.

Matthew’s volunteer victory! Volunteering is an excellent way to develop skills, make friends and give something back to the community. Offering up your time to help others shows real commitment and dedication. Super-volunteer Matthew Dalley, supported by us in Derby, recently had his work in this field recognised by winning the Derbyshire Telegraph Young Volunteer of the Year Award 2016. What a fantastic achievement! Matthew is a talented para-equestrian rider and volunteers for his club, Scropton Riding for the

Disabled, as well as the North Midlands region and RDA UK. Among other things, the 22-year-old organises activities, stewards, runs social media channels and appears on local radio to share his experiences and encourage others to follow in his footsteps. He has a congenital brain condition, autism, ADHD and is a profoundly deaf sign language user – with an everpositive ‘can do’ attitude. “Volunteering and my involvement with RDA is really important to me,” says Matthew. “It is great to be valued for what I do.” Service manager Hayley Lewis adds: “Matthew is an inspiration to us all – he shows us that no matter what barrier there may be – you can always achieve things if you work hard!”

IN TOUCH - SPRING 2017

Golf Day In October we held our annual Golf Day at The Worplesdon Golf Club, in partnership with national charity DEBRA and hosted by Steve Rider, our Vice President. Teams entered on behalf of both charities and competed to win the “Rider Cup”. DEBRA had the winning team but our fabulous Seaford College team took a close second despite being one player down. The day itself couldn’t have gone any better, raising a wonderful total of £11,950 which was split between the two charities. A huge thank you to everyone involved for making it such a success!

Julia is mum to 30-year-old Callum, who is supported by United Response in North Tyneside. What three words describe Callum? Happy, adventurous, content. Does he ever surprise you with the things he does? Constantly. I’ll go to the house and they will have been working with him on different things, and it’s all around his life skills, whether that’s making a cup of coffee, or overcoming some of the obsessions that he has - for example when he couldn’t walk down the stairs. So I’m constantly surprised at how he pushes through everything; he just keeps on going. What do you find most difficult about being the parent of a child with disabilities? The constant worry that he’s alright. He’s 30 now and I know he’s safe. He’s probably the safest he’s been in his whole life. But that ‘mother thing’ kicks in and I can’t help but worry about him. It’s not something you can stop. What last made you smile? On a recent holiday, Callum was in the swimming pool and I was by the side, and he came right over to me and came up out of the water and put his cheek on my cheek. It was just lovely. What is your happiest memory of Callum? There’s a memory that’s stayed with me for all of our lives – he was probably about three, and I had been trying to help him go through his development at that time, and he stood behind the curtains and started playing peek-a-boo with me, and that was a major connection for us.

If you’d offered me a million pounds at that moment in exchange for that experience, I wouldn’t have taken the million pounds, as it was just a lovely experience. If you could go back in time, what advice would you give your younger self? With regards to Callum, it would be: ‘everything’s going to be alright, so don’t worry.’ I was constantly worried before, about what’s going to happen in the future when I’m not around. People with disabilities used to stay in long-stay hospitals a lot, and I didn’t want that for Callum, so it drove me to work really hard to achieve something different. What makes the difference between good and bad support? Communication. Callum has physical communication rather than verbal, so it’s really important for his support staff to understand how he communicates. And on another level, the relationship and communication I have with the staff is really excellent, and that makes a big difference. How has United Response made a difference to Callum’s life? Immensely. They’ve helped him develop his skills and independence, and they’ve supported him when he hasn’t been able to manage because of his anxieties. They are so caring and so loving, and it goes beyond caring; I know that Callum means a lot to them, and they go above and beyond on a daily basis, which is really amazing to know.

UNITED RESPONSE NEWS - THE SERIOUS STUFF

Sometimes the smallest things make the biggest difference.

In this section, we share inspiring breakthroughs of people we support, and in this issue, the heart-warming story of Diane Danby, supported in Kingsway, Co. Durham… Diane is a very pleasant, bright lady with a wicked sense of humour, who is always smiling. A horrendous traffic accident at the age of nine left Diane with a brain injury, and very limited speech. Diane lived at home until her early thirties, until her parents were no longer able to care for her, and for the past ten years she has been supported around the clock by United Response, with all aspects of her care. Her family are very loving and visit every Saturday and always encourage Diane to speak or sing. She can sometimes follow and mimic what is said, and makes very small sounds but when encouraged; you can just hear the words she is speaking.

“One thing Diane’s mother Olwyn always wanted her to say was ‘mum’, which was the one word Diane never said; she just used to laugh when her mum said it,” explains team manager Dawn Baker. Staff at Kingsway have always actively encouraged Diane to speak, and they talk to her all the time. It was her key worker Jean Sutherland who finally managed to get Diane to say what her mum had waited to hear for so many years; she whispered “hello mam” when she visited one day. “I just cried as I was so delighted,” says mum Olwyn. “She now says it whenever we see each other. I’d waited such a long time to hear her say that and had lost hope of her ever saying those words, so it was like a miracle.”

Has your relative had a breakthrough recently that you’d like to share? Send it to anna.carter@ unitedresponse.org.uk 6

We’re delighted to introduce two new members of our team – Nicola Cook, North West Divisional Director, and Mark Ospedale, Director of HR. Nicola joins us from Macmillan and has over 20 years’ managerial experience in health and social care. Nicola says, “This is such a values driven organisation where colleagues really want to do their best for the people they support and have the person at the centre of all that they do. Funding challenges mean things are not easy at the moment and we have to really champion the need for excellent social care. The voices of families and the people we support are so powerful and I want to hear from them and work even more closely together to do this even more effectively than we already are.”

Your feedback matters United Response encourages feedback on everything we do, and are always trying to improve the way we do things. If you have a comment, concern or complaint, you can tell us in the following ways: • • • • •

a one-to-one meeting/phone call with a staff member of your choice to the Chief Executive of United Response to your local Social Services, Health Authority, Local Government Ombudsman to the Care Quality Commission to the Supporting People Administrative Authority

And remember, you can always call our Head Office on 020 8246 5200 or our Chief Executive Hotline on 020 8254 3135.

IN TOUCH - SPRING 2017

Mark comes from social care provider Certitude, and also has charity, NHS and private sector experience. Mark says, “I love spending time hearing the stories of people we support and their achievements, it makes our support and values all very tangible for me. HR is here to support the development of our great staff in their roles, which in turn means that the quality of support they provide is the best it can be. We are challenging ourselves to do even better and I’m proud of the effort our staff are putting in to make this happen.” They are both looking forward to meeting and hearing from more people we support and their families!

Why Practice Leadership is good news for the people we support Developing frontline teams so they understand how to meet the needs of a person with complex disabilities is a dynamic and interactive process. It requires much more than just training - which is why we have been combining high quality training with Practice Leadership since 2005. Practice Leadership is an approach that requires managers to demonstrate effective support by modelling the desired behaviours and using practical examples. As one of the first organisations to implement this approach effectively, we decided to organise a summit to share our knowledge with a group of academics and practice experts at the forefront of this field. We were honoured to be joined by specialists from the Tizard Centre, ABM University Health Board, NAS, BILD and Edinburgh Napier University. The first summit was a resounding success, giving participants the opportunity to share insights and resources, and a followup event was taking place at time of going to press. This news will be welcomed by families of supported individuals everywhere, as it greatly improves the quality of support.

Our latest Annual Review and Impact Report is out now!

If you would like to learn more, download a booklet from www.bit.ly/UR-PL or watch an introductory video at www.bit. ly/PL-vid. Get regular updates from the Practice Development Team by joining their e-newsletter at www.bit.ly/BPNEWS.

Inside this issue of In Touch you’ll find your own copy of United Response’s new Impact Report. We hope it gives you a good taste of what we have been up to and of the variety of different ways we are supporting people to lead independent and empowering lives. The Impact Report will be used to help promote the work United Response does with commissioners and policy-influencers on a national level.

CHANGING LIVES FOR YOUNG PEOPLE

p u n o g n i v o M “Transition is an exciting yet challenging time for young people and their families,” says Amie Dobinson, North West development manager. “It is a time for finding new opportunities, setting goals, making decisions and moving on into adult life. However, it can also be viewed with trepidation, as many parents worry about what’s out there once their child leaves school. Part of our vision at United Response is that young people should have the same opportunities as their non-disabled peers. That means being included in ‘mainstream’ activities and reaching their own potential. Back in 2013, we introduced a new service in Cheshire that modelled this belief. Along with the young people themselves and

their families, two student houses were set up in Ellesmere Port that are home to five young people: Sarah, 24, Alisha, 20, Tom, 21, Luke, 20, and Will, 19. The aim of these houses was to provide an opportunity for the students to attend local college, gain skills for independence, find employment and make friends. Now, nearly four years into the project, we can see just how well this local, outcome-focused model of support has increased the independence and development of the students. “Sarah used to say to me ‘I wish I could go to university,’ and I felt sad for her,” says her mum Karen. “But now she is getting to have the same kind of experience as her contemporaries.” When these houses were first set up, they

were picked with various specifications in mind: being nearby to West Cheshire College, the supermarket and local leisure centre, in order to maximise local connections. Before settling in, the young people, like any other student, spent time buying (and borrowing) pots, pans, utensils and furniture. The transitions were done in a very gradual and person-centred way, with the young people having full control over what pace they moved in. We use Active Support at United Response as a method to encourage the development of independent living skills such as cooking, cleaning and budgeting, as well as creating connections in the community, finding employment and making friends. Over the past couple of years, we have delivered a travel training programme and now each student can

move quite easily around the whole county without support, which is a huge achievement. The accommodation is not a ‘forever home’, but rather a student house where they learn skills, make friends and develop independence whilst attending the local college and then ultimately moving on. Perhaps it doesn’t sound groundbreaking but it is actually a big step away from the traditional model where young people would either stay at home with parents or attend an expensive residential, out-of-county college. “These colleges would be miles away from home in the middle of nowhere,” says Sarah’s mum Karen. “There would be people from all different parts of the country, who would then return

For more info and some top tips for young people, you can access our transitions leaflet: 8 www.unitedresponse.org.uk/blog/dont-get-lost-in-transition 8

IN TOUCH - SPRING 2017

Sex education resource Discussing sex and relationships with people with learning disabilities can be a tricky thing to get right, but now a new resource has been created to help navigate this: Sex and the 3 Rs: Rights, Risks and Responsibilities.

home, so it would be hard to keep in touch. The old way didn’t forge links for young people to live independently.” This model, in contrast, plugs the gaps between living away from home and attending a local college. The project without a doubt has given the young people the

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opportunity to be fully immersed in student life. They summarise themselves that this past year has been all about “throwing house parties, going to Rihanna gigs, getting the bus on our own, getting a job, setting up a DJ business, dressing up for comic-cons, going on dates, shopping and having boyfriends round to stay.” Everything that a student would do. Our support team are there in the background

I live in a house of awesomeness! Will, student

to offer guidance around issues commonly faced by young people, including alcohol, internet safety and relationships. Two of the students have become a couple since living independently, and staff have worked honestly and openly with other professionals to support their relationship. Carol Shepherd, senior support worker explains; “We had some very candid discussions about safe sex and appropriate behaviour; they feel comfortable talking to me and know that I don’t get embarrassed.” Setting short and long term goals is key to transition planning, says Amie. It is also essential to have a “very practical, joined-up action plan to ensure these goals are achieved.” Close working relationships with the students’

This fourth edition from Pavilion Publishing has been updated to account for the huge number of legislative and policy changes that have taken place since the last guide in 2008, and includes photocopiable line drawings and a comprehensive guide to teaching sex education to people with learning disabilities. Order a copy here: www.bit.ly/2hp5PHE

families, the college and their social workers have been equally crucial to the success of the project, and with all the factors combined, the young people’s independence has increased dramatically and their support reduced as a result. “It feels like 2016 was a ‘coming of age’ year for these students who have grown massively in confidence, independence and self-belief since the first time I met them over two years ago,” says Carol proudly.

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GETTING PEOPLE INTO WORK

aving a job is something most of us aspire to; but working is not just about money. It reaps wider benefits around increased confidence and social skills to independence and self-respect.

The Government has set out a commitment to halve the disability gap, which sees only 47% of disabled, working-age adults in work as compared to 80% of the rest of the population. And that’s a very laudable aim. But what isn’t so commonly known is the additional – and huge – gap when it comes to the employment of people with learning disabilities and autism. Only 16% of people with autism are in full-time paid employment and only 32% are in some kind of paid work, with an ever lower figure of 5.8% of people with learning disabilities known to local authorities in a paid job. But at United Response we are working to change that. We believe that having a job – whether paid or unpaid – is not an unreasonable

aspiration for parents to have about their son or daughter, regardless of their disability. There is now far more support available and a far greater acknowledgement that most people with a learning disability or autism can work and, crucially, want to work. At United Response, almost a third of the people we support are engaged in “work related activity” – a paid job, voluntary job or training – with as many again saying they’d like to be. And, we have countless examples of people getting jobs who might previously have thought it would never be possible. A job doesn’t have to be full time to make a huge difference to people’s lives; time and time again we’ve seen the enormous impact that working just a few hours a week can have. Many of us are at least in part defined by our jobs (or past careers) – so why should people with learning disabilities or autism be denied that? The transformation that comes simply from being an employee rather than a service user should not be underestimated. So, our support is all about finding ways for people to work that plays on what they can do, rather than

IN TOUCH - SPRING 2017

Garden Gnomes

what they can’t, and matching the right person to the right job. Broadly speaking, there are three ways that we support people to get a job:

t. Thanks to As part of our “every day” suppor now a listed is ent the Care Act 2014, employm we work so and outcome for disabled people on centred pers r thei with people we support through ortunities opp tify iden planning and review process to t to. wan they if to move towards the workplace,

Through social enterprises such as our innovative Café West project in York, which trains people with learning disabilities to learn catering skills whilst providing the in-house catering to York City Council’s 1000 strong staff team. Or UR Consultants, which employs people with a learning disability or autism to provide awareness training to other organisations and to translate information into easy read (including our very own Easy News). Lots of our services have also set up social enterprises at a local level and these include a car washing business and the “Garden Gnomes” in Richmond who now have a thriving garden maintenance business (see box).

loyment services, which Through specialist supported emp and keep a job with exist solely to help people to find n bases in Greater mainstream employers. From our mai ver support in collaboration Manchester and Cornwall, we deli ent of Work and Pensions with local authorities, the Departm e successfully placed people (DWP) and Job Centre Plus, and hav ema to Newquay airport! in jobs everywhere from the Vue Cin

In Richmond, south west London, an entrepreneurial local team has supported the development of a social enterprise, “Garden Gnomes”, which offers paid employment opportunities to five young people with learning disabilities. Garden Gnomes offers an assortment of gardening services to a diverse mix of organisations and the public within the local community, including libraries, day centres and supported living services throughout Richmond and Kingston. It is managed and staffed by people with learning disabilities, all of whom have distinct roles and take a huge amount of pride in their profession. The group also produce hand-painted pottery for the home and garden, which they sell at local stalls, fairs and community events. Last year, the project, which was developed with just £250 from United Response’s Small Sparks Programme, was highly commended in the Richmond Business Awards. We are also now offering different routes to employment, including supported internships, which provide on-the-job training to young people with a disability who have an Education, Care and Health Plan (EHCP) in place, and piloting a paid traineeship model. We are also looking at how we can get better at employing people with a learning disability in United Response itself, reshaping job roles to provide peer support. We know that people will have worries: what about losing my benefit? What if I lose my job? So, it’s important to be aware of the support that is available, whether it’s a “Better Off” calculation by the Job Centre or applying for Access to Work to provide in work support. In addition, the new rules that will come in under Universal Credit (which will be rolled out by 2020) will also address some of the existing barriers around loss of benefits once wages kick in.

For more information on how we support people into work please visit www.unitedresponse.org.uk/supported-employment-services

YOUR STORIES

he reason anyone campaigns is to affect change. At United Response, we campaign and lobby MPs on behalf of the people we support, urging the Government to do more to improve the lives of people with disabilities. Behind the wider campaigns, we know that families often have their own personal battles to fight. Here, we share the inspiring story of a mother who has campaigned for the rights of her son and the disability community.

Sue’s story – how one mother campaigned for the rights of her son Sue has four sons, two of whom have dual sensory impairments and learning disabilities. Over the years, Sue has worked tirelessly to find the right support for them and improve the rights of deafblind people.

“I believe that families have to take an important part in lobbying and negotiating for better services for their sons and daughters,” says Sue. “I particularly don’t like to use the word ‘fight’ as I believe friendly, determined negotiating, while being clear about your rights, works better than any fight.” Her youngest son, Luke, has spastic quadriplegia as well as dual sensory impairments and so finds communication particularly difficult. He is 43 years old and has been supported by United Response for almost all of his adult life. Sue was instrumental in setting up the service where he lives in Maidstone. She first began to look into setting up a service for Luke when

he was a teenager. She met parents of other children with learning disabilities and sensory impairments, and together they set up a home for five young people with 24hour care. The service has been recognised as “outstanding” by the Care Quality Commission.

“I believe that families have to take an important part in lobbying and negotiating for better services for their sons and daughters.” Sue, Luke’s mum

“Life can be very frightening for someone who is deafblind,” Sue says. “Luke is now a really happy person, because his carers can communicate with him. Staff are able to give him information about what he will be doing each day and he can make his feelings known.” Sue became politically engaged because of her sons – she knew from when they were very young,

IN TOUCH - SPRING 2017

We’ve re-launched our Postcards from the Edges campaign to urge the Government to provide better funding for social care. Amid funding pressures, we want to make sure the public and the Government know how important social care is and why it needs to be properly funded. Postcards from the Edges aims to raise awareness of what good social care can do and highlight how the ongoing shortfall in funding is affecting people. The campaign asks people to illustrate a postcard explaining what social care means to them – this could be through a drawing, a poem, a video message, a photo or any other creative way. We are sharing the postcards with the Chancellor of the Exchequer, Philip Hammond, to show him how vital social care is to the lives of so many people.

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To get involved in this ongoing campaign, visit: www.postcardsfromtheedges.org.uk

that there would be important challenges to take on their behalf. “When it’s your children and you know they’re not getting the care they need, what else can you do?” she says. Sue was initially encouraged to campaign by Sense, a charity which supports people with sensory impairments, and over the years she has been very politically active, both on behalf of her children and the wider disability community. This has included working on the Government’s deafblind guidance, which highlighted the need for deafblind people to have the right to independent, specialist assessments of their disabilities and social care needs. Sue successfully campaigned to have this important guidance included in the Care Act in 2014 – key legislation aimed at improving people’s independence and wellbeing. She has also met with several MPs, asking them to raise issues related

to deafblind people’s rights in Parliament. She has found, in her experience, that some MPs are more receptive than others, but that it is always worth trying. Her advice to others who are interested in becoming more politically active, is to start with local issues that affect your own family member and then move on to bigger campaigns when you have acquired more confidence. “I always used to think that failing doesn’t matter, but not trying does!” Sue says. Inspired to get involved in politics? Contacting your local MP is a great way to start campaigning. To find your MP, what they’re working on and how you can contact them, visit: www.theyworkforyou.com If you have a relative who’s interested in politics and needs accessible information, our Every Vote Counts

campaign can help. People with learning disabilities have the same right to get involved in politics and vote as everybody else, but unfortunately information about politics is not always accessible for them. We launched Every Vote Counts to make information on politics and voting easier to understand for people with learning disabilities. Our dedicated website is always up-to-date and includes easy read information on what politics is, how it works, how to vote and much more. To check it out, go to: www.everyvotecounts.org.uk At United Response, we always encourage people we support and their families to get involved in our campaigns whenever they can. If you would like more information on the campaigns we are currently working on and how you can get involved, please send an email to: campaigns@ unitedresponse.org.uk

SPECIALIST AREA: COMPLEX NEEDS

blamed for n e ft o is s e v li our te outside the ology has on a n ic h c n u te m ip r m g o c g y to e The increasin id of the abilit ilites, quite th o b v a e d is d n o h ti it a w r e le op creating a gen s iPads and xts. But for pe a te h c d u n s a s s e v m a o c h oti ustdgets realms of em e. Christmas m u tr e b m-busting ga o to d g e r in o v b o r n p a is th ore can’t opposite ming much m abled people o is c d e b y n e r a a m s t e a n es ld th smartpho wering the liv e outside wor o p th m to e s is e n y li g fe lo hno - they are li d out how tec n fi e w , e r e H t... live without. ple we suppor o e p e th f o e of som

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Giving a voice

Sam is a very social person and a great communicator, but has limited verbal speech. Instead, he uses Makaton hand signs and pictures. Sam uses his iPad to document his social activities to spark conversations with those around him, to teach Makaton symbols to his housemates, and to regularly Skype his parents.

When Sam first attended his local pub, he took pictures of the drinks he liked best so he could show them to bar staff to order independently. Nowadays, Sam is so well known in the pub that he has taught staff the Makaton signs for his preferred drinks! The iPad has been particularly valuable in helping improve Sam’s relationship with his housemates. He connects his iPad to the TV and they play Makatonbased games together, which has been great fun and has taught them the skills to communicate with him more effectively.

1. The P3 Mobile app allows people who are deaf or have hearing loss to communicate with hearing individuals by providing a speech-to-sign translator. The app can be installed on a computer, phone, or tablet. 2. Look, Cook, and Eat makes learning to cook easy. It can run on iPads or computers, and gives step-by-step instructions and recipes using images, videos, and text. Every menu has a main dish, side dish and a drink or dessert and nine new menus are offered each month. All recipes can be completed with nine or fewer ingredients and tools, guaranteeing a positive cooking experience. 3. Miracle Modus - for andriod phones - made by an autistic person to “mitigate sensory overload”. It makes bright lights, hypnotic rainbows and soft bells. It is supposed to calm the person down and it has glowing reviews. 4. The Avaz app is based on traditional communication boards that use images and written words. It allows you to arrange the communication boards in the way that works best for you, and offers guidance for parents, teachers, and caregivers to help them use the tool most effectively. Custom images and words suited to users’ daily lives can be easily added. It turns the selected images or typed messages into the spoken word.

IN TOUCH - SPRING 2017

Keeping in touch When Dan’s* family moved abroad for work, they explained to him that they wouldn’t be able to visit him regularly but they would keep in touch by phone. Dan loved his phone calls with them but still became very upset every weekend when they didn’t visit him and couldn’t understand why he couldn’t see them. His support staff discussed this with his parents and suggested Dan got an iPad so that they could arrange for the family to use FaceTime with him. Dan absolutely loved being able to see and talk to his parents several times a week and he no longer frets or asks when they will be visiting. He now also uses Skype to keep in touch with his brother who lives in Scotland!

Enjoying the noise John, who has cerebral palsy and is non-verbal, is a happy and sociable young man but can get very distressed when out in busy, noisy environments. Staff often have to take him home to calm him down in a safe place. Consequently staff were always careful about where they took John. Then one day they unexpectedly came across a choir in the street who were singing and shaking their collection boxes and John began to get upset. His support worker took out his iPad and videoed what was going on, showing John the screen. He instantly calmed down and watched it all with fascination. It made sense, as it put the scene in a smaller frame which John found much less overwhelming. Now his staff make sure they always have an iPad when they are supporting John out in his community, and he has the freedom of being able to go anywhere and enjoy much wider experiences.

* Name has been changed

UNDERSTANDING AUTISM

urrent stats show that 1 in every 100 people in the UK are classified as being on the autistic spectrum. For each one of those 700,000 people, how their autism affects their daily life will vary significantly. Here, Mark, who we support in London, shares his perspective on five ways having autism affects him.

I find small changes in my life hard - things that would not usually worry people who don’t have autism can be really stressful for me. For example, in October last year, new neighbours moved in next door and l found this very difficult. My old neighbours knew me well and understood about my autism, which made life a bit easier, but would these strangers understand? I decided to introduce myself straight away to ease the tension, and asked them if there was anything l could help them with, explaining that l have autism and how it affects me. For me, any kind of change – no matter how insignificant it might seem to them – can make me feel really stressed. Even the fact that they do shift work and come in late is hard for me to cope with. But with things that are out of my control, like this, I rely on my support staff to help me find ways of dealing with the stress.

I used to live in a flat but found the noise from the other flats drove me up the wall. I knew I couldn’t carry on living there . My parents supported me to find my own house in a quiet road, whic h suited me much better. I have great neighbours, but at times l still find it difficult communicating how seriously noise can affect me - it can feel like I’m being tortured. One of my neighbours used to start their car up early in the morning and l found this upsetting so would bang on the wind ow. Thankfully, with staff support, I managed to talk to them and have learnt how to deal with it. I also had a hard time when my other neighbour s used to cut their grass, and had to make sure I went out so I couldn’t hear the noise.

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I live in my own home where l am supported by staff, but at weekends l stay at my parents’. I have a close relationship with my mum and dad and have a brother who is married with two children. If l have any problems l go straight to them for advice and guidance. Most people would think how lovely it must be for me to be an uncle but l found it very difficult at first. I worried about what being an uncle meant and how it would affect me. I really needed to get used to having new babies in the family.

I love snooker and watch it on the TV. I love playing it as well, but l prefer to play on my own rather than with someone else. I use to play with a friend but it didn’t work out as he wasn’t nice when he lost. I wanted to join a snooker club local to where l live, so my United Response staff supported me to join a social club which had two snooker tables upstairs. I looked forward to going on Monday evenings but as it started to get busy, I came into problems: two other members liked using the same table as me and the noise of their phones ringing and their talking and swearing upset me. It became awkward as they knew I was complaining and didn’t like it. The stress became too bad so we had to change the day I went to one where it was quieter and I would not see the two members I had a problem with.

Luckily, I got past that anxiety and now I love being an uncle and playing with the kids. I love hearing how they are doing and seeing them when l can and wish I could do more. Sometimes when l visit, l do help my mum bath them, which is fun.

I would like a partner in my life as l sometimes feel left out - my brother is married and my cousin is getting married. I would like to meet someone but who? I would like someone who understands autism, someone to share my house with and who can help me when there is a noise and we can talk it through. In time, l would like support to meet someone. I can take things personally and at times think that people don’t like me. But I am a very sociable and friendly person and like to help others. I do have a close friendship with my friend Paul*. We have known each other since college days. He has epilepsy and at times, l have found that difficult to cope with. We use to go out for curry each week but one day he had a seizure. I found it worrying and was very concerned and scared. Since then, we have decided to eat at my house instead. We have a lot in common and he helps me think things through when things are worrying me. We have shared interests in music and snooker and he still comes to17 see me every week.

OVERCOMING BARRIERS WITH PEOPLE WITH MENTAL HEALTH NEEDS

rue to our motto of adapting our work to suit the needs of each individual, United Response supports those with mental health needs at both the mildest and more severe ends of the scale. In the last issue of In Touch, we focused on how we support people with very complex and long-term mental health conditions. But many of the people we support with learning disabilities also have mild, undiagnosed mental health needs, and our outreach work in this area is vital.

“ I’ve had rocky sta it’s all come out g One person who has completely transformed since accessing this type of support is 50-year-old Ailsa Brown, supported by the Community Network in Cheriton. Ailsa is a bubbly, largerthan-life character, always making people laugh and keen to lend a hand wherever she can. Last year, United Response helped find her a voluntary job at a nursing home which she does twice a week, offering vital social

interaction to elderly people with dementia. It is a role that perfectly utilises her lively, chatty and warm personality. As well as having a learning disability, Ailsa has an undiagnosed mental health need, and a complicated history including growing up in foster care and suffering childhood abuse. She has been considered vulnerable all her life.

When her partner of 12 years passed away suddenly from a stroke eight years ago, Ailsa found it increasingly difficult to care for her autistic son Kieron, now 18. She spent a lot of time in cafes with people who were a threat to her safety, and both Kieron and Ailsa were at risk of exploitation.

“When we first met Ailsa six years ago, she would reject support, something she had always done with social services, who she had become at h t s t weary of,” s ugge s % h 7 c 2 r says area Resea 41% and ing manager rn en betwe s with a lea a Martine lt ve Norton. of adu lity also ha d. i e b e a “So we n s di ealth h l a had to build t men trust with her over time using a subtle approach, which started by speaking to her through her letter box, and sustaining contact over time.” Today Ailsa actively seeks out our support, which is a huge difference to how things used to be. As well as volunteering at the nursing home, Ailsa is very much involved

IN TOUCH - SPRING 2017

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in activities put on at the Community Network, taking on a supporting role, such as selling tickets at the various events held there. “Ailsa had previously gotten a reputation that she could not be trusted, so we purposely put her in charge of dealing with the money, to show that we’re not judging her and that we trust her,” Martine says. Ailsa also runs a pop-up shop outside the Network on an adhoc basis during the summer months, and accesses the counselling service at the centre as and when she needs to. Job Coach, Helen Lawrence, provides background support that Ailsa can access in the form of telephone contact whenever necessary. In total, the hours of support Ailsa gets a week amounts to only four hours, yet this consistency is a crucial lifeline for her. Had it not been available, Ailsa’s mental health may have deteriorated further, impacting on her ability to care for herself and Kieron. Helen says, “Getting the right support stops people from being defined by their condition. Ailsa’s confidence has gone through the roof since we’ve been working with her and she is now thriving.”

Over time, she has also become less reliant on support, as Ailsa herself explains: “Before I had the job at the nursing home, Helen was getting four phone calls a day from me. But now she’s lucky if she gets one or two a day – or none a day! She’s helped by keeping me busy. If it wasn’t for her and Martine, I wouldn’t be doing any of this. I’d just be sitting in the cafs with the old lot. I’ve had rocky starts, but it’s all come out good, thanks to them.” Area manager Martine Norton on how United Response’ outreach work makes a difference: Our outreach work includes support around employment and activities, opportunities for connection with others in the community, and practical guidance around things like finances. People with learning disabilities experience mental health just like everybody else, yet this frequently gets overlooked and goes undiagnosed. This is because ‘out of the ordinary’ behaviour has a tendency to be attributed to the learning disability, rather than a mental health need.

by Ben Harrison

Our Housing expert, Ben Harrison, tells us about proposed changes to housing benefit for people who get housing and support. As you will all be aware, the government is very keen to control public spending and this includes spending on welfare benefits like housing benefit. One of the things they are doing is reviewing how much housing benefit is available, and how it is paid, to people who have additional housing costs because of their support needs. For example, someone with disabilities might need a larger property or an extra bedroom for overnight support and all of these things will mean that housing costs are higher. The main thrust of the government’s proposals is that they want to devolve management and control of the funding needed to meet these additional costs to local authorities from 2019 onwards. You can find their proposals here: https://www.gov.uk/government/ consultations/funding-for-supportedhousing.

Therefore, even a few hours a week of ongoing, flexible outreach support can make all the difference to the quality of life for someone like Ailsa. We act as a port-of-call, and just knowing we are there provides a vital safety net. This reduces the likelihood of conditions getting worse and prevents crisis situations, alleviating the pressure on other services, such as the NHS.

“ FEATURE

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United Response supports people to develop a wide range of relationships, from work connections, friendships and romantic relationships. Here we share a heart-warming story from Lancashire, showing how getting the right support has helped two people develop and deepen their relationship.

eet Nathan and Ria, a couple in their early 30s who took the bold step just six weeks ago to move in together. They have been an item for five years and have been engaged now for three. Their love story began when the pair found themselves at the same college, having previously attended school together. “I added Ria on Facebook, and finally got the courage to ask her out on a date,” says Nathan with a smile. “Our first date was at the Old Sandhill’s pub in St Anne’s. We then went to the pub once a week, every week, to see each other.” The big proposal followed in 2013. “It was a huge surprise for Ria!” remembers Nathan. “It was a Saturday night in the pub and we were watching a local band called The Rockets. When the band took a break, I got up on stage and took the microphone. I asked Ria to marry me in front of the whole audience!”

“I couldn’t believe it at first. I thought it was a joke,” recalls Ria. “But once I knew he was serious I said yes straight away!” “In the beginning, it was a challenge for staff to take a step back and allow the relationship to develop organically,” says senior service manager Vicki Williams. “Particularly because both individuals had 24/7 support, so staff were used to supporting them all the time.” Not only this, but they had two different support teams, so appropriate communication between the two teams was crucial. The couple were used to being reminded about things, so having reduced support has taken some time getting used to. Nathan says honestly that he was a bit unsure at first when Ria moved in. “It took me a while to get used to giving up my personal space but it’s fine now. We have our own routine where I do the ironing and Ria does the washing up, and we both cook together.”

The main issue staff have to navigate when supporting people with relationships is around capacity – being sure that the couple have the understanding of what the relationship is, and what the reality of moving in together is actually about. “It’s been about giving them all the important information and options,” says Vicki. Thorough risk and capacity assessments were carried out and a finance appointee was put in place, with input from social services and the health authority around issues such as safe sex. The actual process of moving in together was approached gradually and in a way that suited both Ria and Nathan. It started with Ria staying over at Nathan’s house once a week on a Friday, when the usual sleep in support was removed for that night. As things were working well, it was increased to more nights together with no sleep ins. Nathan, Ria and the staff team had regular meetings with social workers to

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roning I do the i oes and Ria d ing up the wash

review progress. Their independence has now grown so much that their support hours have now reduced from 24/7 to just six hours a day. The pair are now supported by the same team, and have support around similar things as before, but to a lesser extent. In the past, for example, they always had support outside the house, and going down the road to Tesco was a big thing for Nathan – it was like a day out. Now he does it himself. They’re even getting buses independently now, which they didn’t do before. “We do more from a distance now as they’re so good at supporting each other,” says Vicki. “When I was round the other day to go over some information about benefits with Ria, Nathan explained it to her much better than I did!” Nathan also recently supported Ria to get back in touch with her mother,

who she was previously estranged from, something that has been a very positive thing for her. This story is so special partly because of its rarity but also because of the tremendous amount of support from United Response that has backed and nurtured the relationship. The team have developed Nathan and Ria’s confidence, maturity and selfesteem, and support worker Alec Carr says that everyone is “bursting with pride with the success of the move and their relationship.” When asked what things are like for them now, Nathan and Ria both say that they have “the perfect life.” What an incredible achievement, and one that shows that with the right support, truly amazing things can happen.

GETTING THINGS RIGHT

Putting quality first

t United Response, we often talk about the importance of providing high quality services. To help us practice what we preach, we employ a dedicated member of staff to continuously monitor, evaluate and improve the way we do things, in the shape of our Head of Quality and Safeguarding, Caroline Raynsford. Here, we join her and our Director of Operations, Sarah Battershall, for a conversation about how United Response is making a commitment to keep our standards rising up, no matter how harsh the financial climate.

Why does employing someone to manage quality make a difference?

Sarah Battershall Director of Operations

CR: It offers an impartial view of our service delivery, making sure we’re meeting the standards required by regulators and the needs of the people we support. It also helps identify any areas of concern and share good practice. SB: We support over 3,000 vulnerable people and a large number of those find it difficult to communicate in detail, so it is vital that we support managers to deliver good quality services.

Caroline Raynsford Head of Quality and Safeguarding

We’re building a strong team of Quality Checkers - people we support who are trained and paid to carry out audits - and they offer us valuable insight to how things are working in the services. But we need Caroline to make sure that when issues or trends are spotted, they are acted upon, so we can improve.

In layman’s terms, what does ‘quality assurance’, mean? CR: It is a way of being confident that the services provided to people we support are safe, effective and provide a positive experience. SB: Service improvement is important not just when a service is struggling but also because people’s needs change. We want to improve good services so they can become great!

What kind of systems or processes do we have in place to make sure we are able to effectively monitor and maintain quality services? CR: We have a lot! We have a whole programme of internal audits. We have our quality checkers and we carry out competency assessments on staff to ensure they are following the right processes when supporting people. We do external mock inspections,

carried out by experts. We are registered with the Care Quality Commission, the regulator of health and social care, who inspect our services and provide a rating. We carry out an annual survey to gain feedback form the people we support and their families in order to help us improve the provision of services, as well as a complaints procedure.

How can families get involved in helping us maintain an excellent quality on our services? CR: Provide feedback to staff or management teams, complete surveys when they’re sent out and don’t ever be worried about raising concerns when things don’t go to plan – we genuinely want your feedback. SB: And tell us when something is going well too - it is just as important to know the good stuff so we can see what works and do more of it.

IN TOUCH - SPRING 2017

Caroline, what are the biggest things you will be focusing on in your first year in the role? CR: Initially, I’m keeping busy getting to know the services and the people we support. This is an important part of my role as it helps me understand what’s important to the people at the heart of what we do and also the challenges staff experience in delivering quality care.

What key message would you like to get out to families who may be worried about quality of support declining as funding cuts continue? CR: United Response is really investing in quality to ensure the service we provide meets the needs of the people we support in these challenging times. We are continuingly reviewing our processes and developing innovative ways that support efficiency in our organisation whilst maintaining the quality of care we provide. SB: The lack of any additional funding is very concerning for everyone connected with social care and we need to find ways of supporting people in their communities to live a good life with support. One of the big changes in the last five years, however, is the increased scrutiny that CQC give services during their inspections. These are much more rigorous than previously inspection standards and they are more likely to highlight poor quality support now than they did a few years ago. This provides some reassurance about the quality of support for people. CR: We are also working with like-minded organisations

to share good practice and resources. United Response is part of the Care and Support Alliance, and Learning Disability England (LDE), campaigning for better funding and quality for social care more generally. It is important to us to support people to have their voice heard and families can play a huge part in this too.

Sarah, you’ve had a long career in United Response. How do you think your previous roles in the organisation have helped you understand the best ways of improving it? SB: I trained as a nurse for people with learning disabilities and became a support worker for a few months after qualifying. My training consisted of a variety of three month practice placements in a wide range of settings where I witnessed both excellent and poor services and support. I have built my knowledge and learnt from experience over the years, however, fundamentally - I think good support means putting the person being supported first. We must know what’s important to them, listen to them - by understanding the way they communicate - so we know how they want to be supported. And we must ensure their staff team are well supported by the organisation to do this well. Good communication and relationships are critical to achieving good support. If things aren’t as good as they should be we must have the confidence and humility to take action to improve and get things right. And we need to celebrate with people when things are going really well.

the importance of observation.

How can managers judge the quality of the support people receive? The answer is by seeing it with their own eyes. We can’t tell how good support is without seeing it. That’s why United Response has used observation of staff supporting people as part of the way we routinely audit services for over 15 years. And since 2007, United Response managers have been trained in observation and feedback as part of a programme of Practice Leadership training. Practice Leadership involves a range of management activities designed to improve staff support, including goal setting, role modelling, facilitating team-work and organising time and resources. But at the heart of Practice Leadership lies Observation. Practice Leaders carefully watch the support their colleagues provide; they see how well it works from the perspective of the person being supported; and they check whether it fits with what’s been agreed. Then they give the staff member feedback: what’s good and needs to happen more – what needs to change or be done differently. Staff find it useful because they get a different perspective on what they’re doing, from someone who knows what support is all about. Practice Leaders get to help their colleagues, as well as giving the message that support is important to them and their organisation. Our approach is based on these principles: Quality of life is largely determined by support; support is best understood and improved by observation.

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